Celiac/Chrohns/IBS? Kinda terrified.

[Hartelively]

Hi everyone,

I'm currently in the process of getting tested for celiac and have been so stressed about it, it would be amazing to hear from other people who have gone through a similar process to mine. Does this sound like Celiac? Sorry in advance for the following novel!

Basic backstory: I went from ages 10-22 without seeing a medical doctor except in emergencies due to being poor. I'm 23 now, and just recently (in February) got health insurance for the first time in my life ever. I always thought I had IBS (frequent diarrhea) which made sense because I was pretty severely abused as a child and would often have to have diarrhea after experiencing those "episodes." My girlfriend's parents paid for me to see a therapist and psychiatrist beginning at age 20 when I was severely depressed and anxious, and they thought it was IBS too. I'm no longer seeing the therapist but wish I was now that this is a problem.

The diarrhea details (lmao sorry): I almost never get diarrhea anymore because I was convinced it was IBS and started eating more slowly, taking care to not eat heavy meals when anxious, moving around less after eating, and cutting out dairy and red meat. I will occasionally get diarrhea for no known reason but who knows? It goes like this when I do have it: somewhat sudden pain in my lower abdomen, same area as period cramps. In fact I often mistake the two. I have diarrhea (a lot...), then the pain vanishes. No other stomach or abdominal pains. I never get abdominal pain without diarrhea, and I never continue to feel ill after having diarrhea. I also had a scary incident last August (2017) where I noticed a um...clear stringy substance in my stool. I thought it was a tapeworm, went running panicking to urgent care and gave them a stool sample. They ran a full culture on it (took two weeks) and it was negative. I insisted on doing a second test and it was negative again. So the urgent care doctor said it was probably mucus in my stool.

I got the full celiac blood work panel a few weeks ago and all my vitamins, minerals, nutrients etc. were perfect. So I am absorbing my nutrients well enough. BUT the metabolic Celiac test was iffy. I got one "weak positive." I will copy in my test results, excluding the vitamins/nutrients bits. It definitely seems to me that it indicates Celiac but my primary care doctor said she would "interpret it as negative." However she gave me a referral to a gastro specialist who I have an appointment with on July 13. It will be an initial consultation; I can't get an endoscopy unless that specialist agrees to it. So the actual endoscopy may not happen until late July or even August, September...

Full list of symptoms: Diarrhea, persistent rash on my chest (little red bumps, always flares up when taking a hot shower or getting extremely anxious--went to a dermatologist for this when I was 9 and he just said it would go away but it never did), occasional small mouth ulcer (haven't had one in about a year and a half), and often feeling fatigued and irritable. I also feel very cold easily, much more easily than the average person. I've also ruled out the following with previous tests: anemia, diabetes, and thyroid issues. Basically every blood test I've ever done has come out perfect until this one weak positive!

I should also note here that I have a second cousin with Celiac (my mother's first cousin).

I can accept it if it's Celiac. In fact I hope it is because I would love to do away with diarrhea and the rash!!! My BIG fear is that it's Chrohns instead. But I have never had any bleeding in that region.

Overall Celiac Disease Panel results (all results just said "normal"): WBC, RBC, Hemoglobin, Hematocrit, MCV, MCH, MCHC, Neutrophils, Immature Granulocytes, Lymphs, Monocytes, Eos, Basos, Platelets, Neutrophils (Absolute), Immature Grans (Abs), Lymphs (Absolute), Monocytes (Absolute), Eos (Absolute), Baso (Absolute), RDW.

Metabolic Celiac Test results attached as an image...

Thanks all. x

Edit: Forgot to mention that I am currently still eating plenty of gluten, and even have been known to eat an entire baguette by myself in one sitting haha. I do not get diarrhea after this. If my diarrhea is connected to gluten, it's certainly very delayed.

 

[tessa25]

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to see if you have celiac.

It looks like you are missing the DGP tests. Perhaps you can get them done while you are waiting for your gastro appointment. You could possibly have a more definitive result from them.

 

[Hartelively]

Oh, wow, thanks, I was told by my doctor that I had the "full" panel but I guess not. Unfortunately I have the type of insurance that means I have to see her again before I can do anything else and she is out on vacation until July 10 so there is almost no point in trying to make another appointment before the specialist one. I doubt urgent care would do it?